G and As First Trip to Camp Sanguinity

Good morning! I apologize for not writing yesterday morning but there was already enough chaos with trying to get the rugratigans out the door and on their way to Camp Sanguinity. It is funny how we have grown throughout this process of parenting. I vividly remember the first day that we sent Sydney off for a day at Camp Sanguinity. It was so surreal. I remember sitting at my office all day wondering and worrying about her. Would she be okay with out us? I was completely worthless the entire day. I could think of nothing else and Lynley and I spent the better part of the day chatting back and forth over our instant messengers. We were giant puddles of panic and worry.

I tell you that because on Graham and Ainsley's first trip to camp it was the complete opposite. No, it is not that we love them any less. First off, they made it easier. They were so incredibly excited to go to camp that they forgot to even give us hugs or kisses goodbye. We rectified that situation but, it was certainly not due to their need for parental comfort. They were ready to go. Second, we, too, have been hardened by years of parenting. We knew they would be just fine. They had each other and we knew they had Sydney once they got there. On top of all of this we also knew they had all of the Cook Children's nurses, physicians, and child life specialists to keep them happy and safe. If I am being completely honest, I never even had a second thought about it. I was utterly confident that they would have a great time.

They made it back at about 5:15 PM last night. They were worn out but happy to be home. Lynley used her new phone to interview them. Here you go, straight from the twerps themselves.

All in all, I consider this a great success. Today we should hear the rest of the story as Sydney returns from her week long adventure at about 11:00 AM. We can't wait to see her. The big question will still remain though. Can we make it through the weekend without them turning back into 'offspring.'

Not to worry, I have been rejuvenated. I overfloweth with twerp purpose.

I wish I could blame myself

Good morning! Twerp reconditioning day 3 has begun. I would like to tell you that we have taken some magnanimous steps to assert our control. I would love to brag about my superior parenting skills. I would be ecstatic to share with you my stories of twerpdom triumph. But, alas, I really have not done a single thing. It seems the disruption of the twerp nation has been all that was needed to jolt them back to reality. Outside of some typical 4 and 5 year old hyperactive craziness I could not describe my children as anything less than superbly angelic. In fact, I have been so impressed by their behavior that I have stopped referring to them as merely my 'offspring.' There is a spring in my step. It must be Daddy pride.

I do have two conundrums, however. I miss my Sydney. While I am sure she is having a tremendously good time at camp I miss her. I miss seeing her in the mornings and getting that first snuggle. I miss swimming in the pool with her and doing laps with her on my back. I miss my little compadre. On the other hand, I clearly don't miss the devilish 3 and I know that upon her return the gaggle will quickly regain its power and I fear falling back into the same behavioral rut. I have to find away to keep things shook up. I just haven't figured out what that is.

Yesterday, we received a bit of a surprise. Both Graham and Ainsley had been wait-listed by the camp that Sydney is attending. You may recall that I stated that they were booked full. Well, as it turns out, 2 spots opened up yesterday afternoon and it looks like they will get to go after all. Early tomorrow morning we will load them up on the bus to spend the day at Camp Sanguinity. Sydney will be completely and utterly excited to see them and I know they can't wait to see her as well. It will be an excellent reunion for them.

As for me, well, I really don't know what I will do with myself. Me, without rugrats? I don't even know what to think. I guess I will just bask in the glow of a little freedom. I know they will have a great time. I know they will be in good hands.

No worries.

I might just decide to spend the typing away on my computer in my jammies and flip flops.

Well, I had best be off. I have a few meetings today and a mountain of neuroblastoma research proposals to review. In fact, I have almost 30. That is approximately 3000 pages of medical jargon and I only have about a week to get all of my reviews in.

I am not going to be very exciting over the next few days. In fact, I may just be the most boring person on the planet.

But, I will have significant purpose.

Twerp Reconditioning

Good morning! Wow, I always forget how much easier it is taking care of two kids instead of three. Consider that, and the fact that their leader is the one that is away and all of a sudden they are like fish out of water. Seriously, it comes down to the simplest things. We have completely disrupted their systems of parental abuse. They are like putty in our hands.

You may think that I am overstating the impact for dramatic effect but I assure you no such motive exists. It is truly the dawn of a new day.

It comes down to the smallest of things. Take getting dressed in the morning for example. On a typical morning, as soon as I get out of the shower, the command comes down from high authority (me) "It is time to get dressed." On a normal day, they just sit there. You see, they are waiting for their leader to move. Until Sydney does something, nothing can be expected of them. This is not because Sydney is being difficult. Rather it is just because she is usually the last awake and the most tired. It takes some time to get her engine started and for her to become aware of surroundings. I get that. In fact, I ask twice before I turn on mean Daddy voice. After a delay, she is finally doing as I asked. Reality sets in. Sydney gets up and starts getting dressed. Like zombies, Tweedle Dee and Tweedle Dum follow her. It is annoying. It is as if they need Sydney's blessing before they do anything we ask.

So what changed in one simple day?

Well, yesterday morning began as usual. Sure enough, as I stepped out of the shower I made the announcement. I kid you not, they looked straight at each other as though completely baffled. They had no clue what to do. It was as if I asked them to solve a calculus problem. They clearly had no idea what to do. All of a sudden, with looks of shock and a complete lack of understanding they got up and began to put on their clothes. They kept looking at each other as if searching for answers.

I turned around and went back into the bathroom where I don't think I could have laughed harder. Throughout the day, this episode was replayed on several occasions. It seemed as though every time I asked them to start doing something they actually did it. The funny thing was that they looked as though they were being controlled by remote control. They had no idea what they were doing or why they were doing it.

The transformation is happening! (Evil Laugh)

Purpose is suddenly flowing through their veins they just don't know what it is.

The Birthday Girl

Well, today, marks another milestone in our lives. Lynley is one year older today. While from all outward appearances she seems to be handling another year fairly well I can tell that it is clearly not to her liking. She keeps referring to her self as old. As in, us "old" folks or my "old" body. It clearly isn't going as well as one might get the impression. I told her she was like fine wine only getting better with age. However, she just assumed that I though she was getting more vinegary. In all honesty, I think she is more like my grill outside. The longer she is on the hotter she gets. Of course, that just makes her think of me as a dirty old man and then that starts a whole other thing about how she is so old that her husband is a dirty old man. All I can say is that as long as I am married to her I will continue to be a dirty old man. She is hot in my book.

Okay, okay, enough about the old people. What is going on around the Dungan household? Well, we are down to 2 "offspring." Yesterday afternoon we delivered Sydney to Cooks and sent her off for a week of camp. She was ecstatic to go and it was not long before she had reconnected with many of her friends. She spent much of her time with Alaina, another neuroblastoma patient and one of their other friends. I was amazed by the size of the group that was heading out to camp. It was three bus loads. In fact,this year there was a waiting list for the camp. They did not have enough space for many, if not most, of the siblings this year. There are apparently too many survivors of cancer and now the space is limited to patients only.

That is pretty awesome if you ask me. We finally reached a point where that has become a problem. Of course, it also make me remember all of those that we have lost who were not able to be there. I also had the realization that more of her friends were gone than were there.

It was bitter sweet.

In the end, Sydney went off without a hitch. She was ready to go. I was a little saddened by all of this independence. Although it is good for her, I just don't know that I am ready for it. In the end though, she went running to the end of the bus to wave goodbye to us one more time. That's my girl. She will be back on Friday and, of course, we all ready miss her.

However, we won't be able to miss her for long. We are going to be busy with a little boot camp of our own. Now that their numbers have temporarily thinned it is time for aggressive man to man and woman to woman training. It is time for the parents to reassert their control and turn these offspring back into the wonderfully awesome little twerps that we know them to be.

Welcome to home twerp camp 2009! (evil laugh)

There will be plenty of purpose this week.

I dub thee offspring

Good morning! Well, here we are, heading into a holiday weekend. Once again, Lynley has usurped this holiday for her own benefit. Yes, she is claiming this as her own birthday. Why she would want to do this when it makes her a year older 2 days earlier is beyond me. However, I also know better than to argue with my blushing bride's logic, so I will let this one slip by. Therefore, tomorrow we will be celebrating Independence Day in concert with Lynley's XXth birthday.

Last night was a fairly late one for the kiddos. Unkie Jay had a 3 hour layover at DFW airport so we ran over there to take him out to dinner. The rugrats were incredibly happy to see him. Unfortunately, we did not get home until about 10:00PM so, even though we will let them sleep in, I am guessing that Claudia may have her hands full today.

This, unfortunately, would not be much different than she has experienced much of the week. My kiddos behavior has been out of control. I don't know whether it is the summer heat, the fact that there have spent 3 weeks together, or what the issue is but, my kids have gone from good to bad in a very short period of time. Lately I have written off Ainsley's behavior as being age related. (I guess I should have said hoped.) I still do not know that it is not the case, but it certainly has not improved. Worse yet, during this same period, both Graham and Sydney's behavior has begun to take a slide.

The are spoiled brats with bad attitudes.

There I said it and I said it about my own offspring. In fact, during this time of reconditioning, I think that is a good name for them. Right now the aren't cute enough to be twerps. Until I see a vast improvement in their behaviour they will no longer be known as the twerps. From here forth the shall be dubbed 'offspring'.

There, that makes me feel much better.

It is true they are grubby, little, misbehaving miscreants and neither Lynley nor I have figured out what to do about it. It isn't as though they have not met with resistance. Neither Lynley nor I have been tolerant of this behavior. I don't know what it is. I don't know whether we are not being consistent enough or whether this is just a tide that has flowed in due to the fact that it is summer and they are all back together. Regardless, I don't like it.

Not one little bit.

The good news is that next week things will be shook up a bit. Sydney is going to camp. This will be great for her and she is really looking forward to it. For the rest of the 'offspring' it is a good idea as well. Without their normal ring leader to listen to we will have a better opportunity to break through the veil of bad behavior. Additionally, for this week, we will not be outnumbered. We have a legitimate chance to regroup and retrain. We will no longer be playing zone. It is one on one baby. Twerp Hell Week - here we come.

Purpose is fun but always a challenge.

A delay in posting

Good morning! Well, for some reason, I was not able to reach my blog until late this morning so I did not get a chance to write. The good news is that the whole family is doing superbly. The twerps are a little questionable but other than that everything seems to be going just fine. Oh, and it isn't their health. It is their mental state.

More on that on the days to come.

In the meantime, I am off to purposefulness.

Another Perspective on the Induction Decision

As parents of children with neuroblastoma, we often make treatment decisions based primarily to two factors. The first is based on response. What treatment has the highest response rate? What treatment is going to create the biggest change? The second thing we consider is toxicity. What side effects come with this treatment? What is the impact on quality of life? Will something bad happen? We then take these two factors, mush them up in our brains, and spit out the answer for what treatment plan we follow.

Done. Easy answer.

Hold on. Unfortunately, this formula misses some very important considerations and often can lead you astray. The fact is that we don't live in a world which only has two factors - response and toxicity. Every decision we make has implications which will impact future decisions. In this way each decision also caries a significant risk factor. There is risk that a particular choice will make you ineligible for something later on down the road. There is risk that your child may not respond or the risk that something will happen that will preclude you from getting treatment. As I will try to demonstrate today, these are all extremely important factors that should weigh heavily on any decision. In today's high risk neuroblastoma treatment reality these may even be the most important factors to consider.

This is where my difference of opinion lies.

One of the appealing aspects of treatment at Sloan Kettering is the promise of no transplant. According to them, in their experience, they do not believe a transplant is necessary when antibodies (3F8) are used for consolidation of minimal residual disease. I should point out that this is in direct contradiction to three large randomized phase 3 trials which showed that transplant increased event free survival by 11% or more (these trials did not include the use of antibody, however.) Regardless, when analyzing the toxicities of transplant it is easy to be swayed by the allure of not having to have a transplant and the hope of achieving the same desired result. It is very appealing. People evaluate the response - children appear to achieve remission in similar numbers - and then they evaluate the toxicity - it isn't a transplant. The problem with this type of thinking is that it misses some extremely important factors. First and foremost, it misses the point that you are giving up on the proven standard. This is not additive treatment, this is "instead of" treatment. By not transplanting, you are risking the loss of an increase in survival of over 10%. It may very well turn out that the doctors at Sloan may be right. Someday, it may be proven that a transplant is not necessary given the medical technology at that time. But, in the meantime, you are very definitely adding more risk to your child's chance of success by not transplanting. You are gambling a 10 to 15 percent increase in survival in the hope that this other treatment (antibodies) will do the same job - a job that they are yet to be proven to accomplish. I think every one would agree that, in this case, if you looked at it from the perspective of this type of risk (the risk of decreasing survival), the best option would be to do both.

Another risk that many people do not think to consider is the risk of not being able to receive the treatment. This is one of the saddest realities of all. What if you decided to go to Sloan Kettering? What if you decide to reduce your risk of toxicity from transplant and forgo it? What if you decide to use 3F8 for consolidation instead?

What if you HAMA'd in the first or second round precluding further treatment?

This risk is significant. It happens. There are kids sitting in this scenario at this very moment - kids that could have been transplanted and received antibody. But, the question remains. You gave up transplant in the hopes of reducing toxicity in favor of a relatively unproven treatment (for this purpose) and now, because of a fluke, because of an immune reaction, you are no longer eligible to receive that treatment either. Or, you are no longer able to receive that treatment again with out some significantly high doses of chemotherapy - high doses of chemotherapy which offer significant toxicity but still do not provide you the benefit of a transplant or any guarantee that you will be able to get enough antibody to get the job done. In this scenario, the nightmare, you have actually increased your risk on at least two fronts. Your decision cost you the benefit of a transplant (11%+) and the benefit of antibody (20%). By choosing this route you have effectively reduced your chances of survival by over 30%. Could you go back and do a transplant? Probably. But, would you become eligible for the ch14.18 antibody? Not today.

That is a big gamble - an especially big gamble for something that is yet to be proven.

The third risk is the risk of treatment failure. I know this is something that no one wants to consider but, it too does happen. In fact, I have seen some articles quote numbers as high as 20% (or higher) of patients fall into this category. In this scenario, the standard therapy has failed in induction. You have done your due diligence yet, even given the best medical knowledge we have, your child has failed induction. What are the risks here? What impact did your decision of which path to take have in this scenario? I think the risk here is in eligibility. You see, if you fall into this category of patients the most important thing you can have is options. By participating in a standard induction you are naturally eligible for several options that you might not be otherwise. An example of this would be an MIBG/transplant regimen. This type of transplant has been extremely effective for a subset of these individuals. In fact, for some, this was the ticket that got them back onto the road to survival. I am not advertising this trial but simply pointing out that this is a treatment that is available and effective for a certain subset of the non responding population that may not be available to them if you decided on a different path from the beginning. It is just one example of risk in this group of patients.

Finally, before I run out of internet, I would be remiss if I did not address the most obvious but less publicized risk. By choosing not to participate in a COG trial, at this point in time, you run the risk of not being able to receive the ch14.18 antibody. This is the one antibody that has been proven in a randomized phase 3 trial to increase survival by an additional 20%. One could easily argue that choosing not to utilize ch14.18 carries inherent risk.

Now, please, don't send me email telling me that 3F8 can do everything that ch14.18 can do. Trust me, I know what it can do. The point is that by choosing 3F8 over ch14.18 you are taking on more risk. At this point in time ch14.18 is a proven commodity. We don't know whether 3F8 works better, the same, or worse. Furthermore, with 3F8, we also have the additive risk of an early HAMA - a risk that is greatly minimized by the ch14.18 antibody.

You see, today is not about response or toxicity. My arguments have absolutely nothing to do with which treatment is better. That is another discussion entirely. This entry is about reducing risk and increasing options.

Risk is the third ingredient of the treatment decision that we often forget to consider fully. This is unfortunate when, as I have demonstrated today, it just might be the most important component.

Let the email fly!

It is all part of the purpose equation.